Since I shared last nights inspired thoughts inside of such uncertainty, I thought it best to share with you what hit Daniela and me today.Between the hours that I completed my March 25th blog entry and right now, I've gotten some serious perspective about spending six weeks here. I fell asleep at 1 am. I then woke up due to pain at 1:30 am, 2:30 am, 3:30 am, 4:30 am & 5:30 am. Daniela rescheduled all my morning appointments for the afternoon and I slept until 11 am. Then when we got to the hospital, I was experiencing pain that was new to me - possibly a result of the tumor touching a nerve - possibly a result of me moving around from appointment to appointment for three days straight. I laid down on a couple different couches in a couple different lobbies while Daniela went to the cafeteria and got our lunch and then took a couple of my meetings for me while I continued to lay down, bringing the staff to me when necessary.
My point? Should this happen while I'm here for treatment at a time when I'm here solo, I would have to manage this myself. All the sitting and continued movement would not have worked. It would have made my pain even worse which would require narcotics to treat and I would have been even more mentally "foggy" than I was this afternoon. And Daniela will vouch for how "foggy" I was today.
I have a pretty strong constitution, yet the side effects I will experience from chemo & radiation are unpredictable and I have a concern about what it will look like if I am down here solo and the side effects do in fact hit me hard. Radiation can leave the skin feeling badly sunburned or worse, blistered. My current form of transport when significant walking is required is a wheel chair. And if I have to roll around sitting on a stinging behind so I can go to my appointments, go to the cafeteria at least twice a day as well as to and from the hotel sitting in the shuttle (I can lay in my car if I'm not driving)...add some fatigue from the treatment and some mental "fogginess" from the narcotics and that's a perfect recipe for misery.
I am clear neither situation is ideal and the only thing left for me to do is simply choose where I want to be and move forward. I anticipate making that choice relatively soon.
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Since they provide the ultimate in the "not necessary" [flight to Philly - limo ride to hospital] - it seems odd that the treatment as an "in patient" would be provided for as well.
ReplyDeleteSilly question however, have you asked them for what you really need?
An aide? A companion to be aware of your needs? Someone to call a dr or rn when you can't sleep because of pain?
What is it I don't understand?
All and All, I would rather be i Philadelphia.
ReplyDeleteI guess I agree with you mother. I assumed your room was right in the hospital with a little call button that you hit if you were in distress. Maybe that isn't the situation. If your staying in a hotel of some sorts on your own than maybe being there isn't the best bet. I still believe it is, but also think that if you had to get up for every little need you had, and had no assistance at all than maybe that would cause you more distress than being home and having to work through the questions and discomforts with your support group at home.
ReplyDeleteGood luck!!
Is there a middle road where you can go to Philly once a month, or even for four days every two weeks (chemo regimin?) and then be home the rest of the time, or is that not an option?
ReplyDeleteA related question: can you work with an Ithaca doc who would be agreeable to carrying out the CCTA-endorsed treatments, but would be under the consult of the CCTA doctors, where you would go every month, maybe, for a check in?
reply to anonymous:
ReplyDeleteIt is not an option to break up the treatment. I will need a constant treatment to achieve the desired results.
I don't know if I could work with both groups, but I am clear that whom ever I choose, I want to be under that one groups care so there are no crossing of lines or mid-treatment issues between them.